Stephanie Ernst, Founder of TAPS Support, shares how her twin girls were diagnosed with twin to twin transfusion syndrome (TTTS) and Twin Anemia Polycythemia Sequence (TAPS) – a rare disease affecting twins. Read her rare journey now.
In honour of Rare Chromosome Disorder Awareness Day, Becky Tilley has kindly returned to our blog to share how her and her family’s rare chromosome condition, Koolen-de vries syndrome, has impacted her mental health. Read now and share!
This week’s blog is written by Becky Tilley, a KDVS mom and Kool person. Becky shares her experience of being diagnosed with the rare condition, Koolen-de Vries Syndrome, after her oldest son and now youngest daughter were diagnosed with the same condition. Becky’s story first appeared on the KdVS Foundation’s website.